Multiple Chemical Sensitivity (MCS) - How Bad

[helsbells]

This is a very extreme problem for me. I know a lot of PWME's have problems with this to a certain extent but for me this is a killer. I have just moved house this weekend (No choice let me say wouldn't have done it otherwise) and I have had anxiety, depression and pain from th enew smells. It was picked as it was wasn't new and swish - no outgassing we thought but once here the dust, perfume smells seemingly embedded in the walls! and worst the gloss and radiator paint we think must have been done before house was put on market about 8 months ago. As well as the above symptoms it also seems to make my Aspergers more marked meaning I hate the house even more for not being my familiar space. This coupled with a partner who works at a job he hates to support me now with a much increased outgoings - the pressure at the begining of the week was almost intolerable. So forgive me wanting to find someone as bad it is not a nice thing to wish on anyone but it does feel a bit less lonely. i react to all the usual supects, Vocs, perfume etc but also woods outgassing particularly pine (the year we got a christmas tree wasn't much fun). All my Dr can do is prescribe anti-deps but they might lift the mood but will without question increase the pain. is anyone else out there as bad. Oh EMFS too! Thanks everyone

 

[HopingSince88]

Not sure where you are located, but my daughter had severe MCS that was ameliorated by a process similar to (but not) homeopathy. The doctor injected small doses of substances intra-dermally, would wait to see if it provoked a response, then - if it did - would inject the same offending substance in more dilute concentrations until she found one that would shut off the response. Once the right dose was determined for each allergen, she would mix vials that would be taken sublingually.

 

[willow]

The thought of moving house scares me. I feel for you.

My other half is to be made redundant and has been asked to move overseas. We think the payout is going to be ok and really, really hoping to stay here.

We're due new neighbours here and even that's a bit of a concern. Fresh paint even some distance away can leave me shaking and paralysed. Perfumes especially air freshner, fabric conditioner and a few others irritate my lungs, nasal passages and give me a headache. the laundry products from the line drying laundry of a neighbour a few houses up even gives me a headache and chokes me. There's one particular perfume and that has me trying to resist rolling around in the feotal position. It upsets every cell in my body... ok it might only feel that way.

DIY stores I've had to be carried out of them before now.

Smoke I smell that even when the offending plume can't be found.

Etc etc.......

EMFs... oh yeah! Really shouldn't be on here at all but keen to read some news and views.

 

[helsbells]

Not sure where you are located, but my daughter had severe MCS that was ameliorated by a process similar to (but not) homeopathy. The doctor injected small doses of substances intra-dermally, would wait to see if it provoked a response, then - if it did - would inject the same offending substance in more dilute concentrations until she found one that would shut off the response. Once the right dose was determined for each allergen, she would mix vials that would be taken sublingually.

Hi gorgeous Labrador (something I would love but guess what I react to dogs now :-()
I do have neutralization vaccines for food and ust but they just hold back the tide. Actually the chemical ones made me too ill to take. And I always have vaccine smade up for new supps and medicines but that never works. I used to EPD which was more successful for chemicals for a time but i reacted one time and it just made everything much worse. Im in the UK by the way will work out how to add that.

 

[helsbells]

That was actually the reason we had to move very thin walled terrace let fumes through, not great when they were farming cannabis. As you know we become like sniffer dogs, i know this sounds really bonkers but I actually smelled pienapple through the tin once - its a nightmare. I cannot stay in hotels, go on hols, have dear friends stay overnight because try as they might they cannot become smell neutral enough, so a few hours is generally enough. They do their best but it really affects brain fog and pain levels. EMFS as long as I avoid really bad stuff like wirless, dect phones and mobiles - I do text but will never speak on them except in dire emergency. The worst of it is I am a really self conscious person so it all really makes me feel like its all about me whereas I can just do the ME bit quietly if you know what I mean. Ditto re email, pcs I don't care if it does make me a bit worse it is a phychological lifeline and forums like this are a blessing I suppose the only upside, if you can call it that, is I am so bad even the NHS acknowledge it, but it's a dubious honour. Sorry if I haven't made you feel better about moving - Are you anywhere near mansfield?

 

[maryb]

The things that helped me when I was at my worst with MCS was to stay in one bedroom with the window open (plenty of layers on) I then bought 2 high powered air filters from Healthy House, left them on overnight downstairs on full power and was then able to suffer going downstairs for a short while at a time, this went on for weeks, I was also fortunate to be able to get a cleaner at the same time who scrubbed and hoovered the place until it was gleaming, all with just hot water! This got rid of any dust mite problem. It was a horrendous time and I sympathise greatly with you, I still have the air filters on low all the time, make the room quite cold but I'm much better now with everything anyway. Hope yours settles down soon.

 

[glenp]

Drains and Air

I have recently connected fumes from the drain pipes as being a problem. When i do laundry I plug the sink drain and weight it down, I find it helps. I didn't realize that fumes from the washing water emptying were coming up through the drain pipes.

I think with many of our homes being more air sealed - it can make our problems worse. I am now leaving the kitchen and bathroom fans on and trying to leave windows open as much as I can.

I am finding both of those are helping me.

I am just thinking now - if maybe all drains being plugged would also help. I used to notice a smell from the basement shower drain and had to keep it covered.

glenp

 

[HopingSince88]

Most drains have S traps. Before you plug the drain slowly pour a about a cup of water into the drain. It will also help to keep odors from coming up from below. This also helps to keep fruit-flies out of the home in warmer weather. My son works in a commercial kitchen and was the one who told me this trick.

 

[lostinthedesert]

Raises Hand

Had it since '86 when i got CFIDS. It messed up my life a lot. It eased up a bit in the mid '90s. Started to slowly get worse again but really got terrible in 2006. I have been homeless since that time and lived mostly outdoors in the desert. I find that a couple of miles between myself and human habitation usually works for most things except smoke. Still, i have more than once or twice been hit by a clothes drier at 1.5 to 2 miles. Right now i am sealed up in temporary rental rooms in an mcs safer house out in the country. Sometimes i can leave the place wide open but sometimes i have to close up and ride through whatever is going on outside. I can't tolerate a good mask but rely on a 3M 8577 in order to go to town for food - inadequate protection but absolutely needed. That is the only store i ever go into. I usually change into my "bad" clothes and change back when i come out. Sometimes i have to wash up a bit. If i am living out of the car at the time, i wash and/or repackage the food right in the parking lot. I only run the car once a week if possible. This is how i survive. I have many reaction symptoms...too many to list but many are like being punched in the face. I also have had airway reactions. Hope we find some relief. Avoidance has worked better than anything else but it is on way to live. Peace, S

 

[brenda]

helsbells

MCS is a bummer. mine got a lot worse when I got bitten by a tick but that coincided with a new house. In fact I became sensitive to everything. At its worst, I could not be near a tap running due to chlorine and no magazines could come into the house.. I wore a mask to go out and sitting in the car in traffic was terrible. The fumes would leave me barely knowing what I was doing. Before then, I had been made worse by pesticde exposure.

I tried the neutralising vaccine but it made me worse - like 25% of others.

The only thing that helped was aviodance and working on my home especially the bedroom so it was as chemical free as possible. You can get paint that is chemical free to cover ordinary paint and even some covering for new carpets. Having gas in the house was bad for me. Finding suitable housing is the main problem.

Eventually I improved and now as long as I do not breathe in traffic fumes, and move away from perfumes outside, it is not bothering me day to day. This is since I have imroved my overall health and am on a strict no grain diet and am in a home that is good with wooden floors and no gas. This is the number one thing that has helped me I think with the MCS.

If I am not mistaken Sarah Myhill suffered MCS after sheep dip exposure but she has improved herself too. So there is hope but it takes time.

Although the NHS did seem to be ok with it and I got awarded DLA for my problems in traffic, officially the NHS do not accept it as physical. There is only one country which does and that is Germany where I am now but even so, it is just classed as an allergy. The doctors here will not force me to take medications in an emergency. In the UK I did not have an advocate that would be with me to fight against that. I had already given my A&E the list of things I could not have but there was no saying whether an individual doctor would take notice. You should get this issue sorted out.

I got a medic alert bracelet to say what anaesthetics I cannot have in an emergency and get a dentist to give me a local without adrenaline or preservatives. One dentist lied to me I guess thinking it was all in my head and I had a bad reaction and felt I was dying.

There are some good sites in the US with advice on MCS. Good luck!

 

[willow]

I'm closer to Leicester.

RE NHS acknowleding your MCS how did you do that. Last time I saw my doctor it was 3 years ago and I saw her outside. There's one place I can go on holiday but it's in Spain which involves the horror of airports. One time they wanded me, I lost awareness But i could feel the molecules in my body moving backwards and forwards with the metal detecting wand. My legs wouldn't move afterwards and i needed a wheelchair to get to the plane!! So stoic :-( Took me 5 days to get over the worst but for months afterwards EMFs were Hell. There was a spell of electrical storms and every time the lightning flashed it flashed through me and I felt awful for days.

I've lots of sensory and brain symptoms that also stop me seeing people. But the only way I do okay-ish is when we are outside. Anyone in my home is a bit of a nightmare I smell the laundry and persoanl care products for days.

I'd love to stay and chat but been on here far too long and the sun is calling me outside.

 

[helsbells]

The things that helped me when I was at my worst with MCS was to stay in one bedroom with the window open (plenty of layers on) I then bought 2 high powered air filters from Healthy House, left them on overnight downstairs on full power and was then able to suffer going downstairs for a short while at a time, this went on for weeks, I was also fortunate to be able to get a cleaner at the same time who scrubbed and hoovered the place until it was gleaming, all with just hot water! This got rid of any dust mite problem. It was a horrendous time and I sympathise greatly with you, I still have the air filters on low all the time, make the room quite cold but I'm much better now with everything anyway. Hope yours settles down soon.

This is heartening maryb, it is an unhelpful mindset it brings about I am usually...well I wouldn't say upbeat but stoical at least, about my situation. This just knocks that for six then I just start imagining the very worst so that my mind jumps to the possibility that I am sitting on a ton of geographical geopthic stress...the sort of everything is terrible and ever thus shall be mentality. Will the healthy house filters do VOCS -I have a daikin (photocatalytic air filter) - a few years ago from there but thought that was mostly for dust and particles. i thought there was somthing a bit more advanced available in the US but you would get heavily sting for import duty?? Any advice you can give me there would be most helpful as I do need to invest some more. Many thanks

 

[helsbells]

Had it since '86 when i got CFIDS. It messed up my life a lot. It eased up a bit in the mid '90s. Started to slowly get worse again but really got terrible in 2006. I have been homeless since that time and lived mostly outdoors in the desert. I find that a couple of miles between myself and human habitation usually works for most things except smoke. Still, i have more than once or twice been hit by a clothes drier at 1.5 to 2 miles.Peace, S

You have my utter admiration - I salute you soldier. Who would have imagined staying alive was such hard work.

 

[helsbells]

helsbells

MCS is a bummer. mine got a lot worse when I got bitten by a tick but that coincided with a new house. In fact I became sensitive to everything. At its worst, I could not be near a tap running due to chlorine and no magazines could come into the house.. I wore a mask to go out and sitting in the car in traffic was terrible. The fumes would leave me barely knowing what I was doing. Before then, I had been made worse by pesticde exposure.

The only thing that helped was aviodance and working on my home especially the bedroom so it was as chemical free as possible. You can get paint that is chemical free to cover ordinary paint and even some covering for new carpets. Having gas in the house was bad for me. Finding suitable housing is the main problem.


There are some good sites in the US with advice on MCS. Good luck!

Thanks a lot for this informative reply - when you say wood do you mean the bare boards of the house or do you get flooring put in - It is just trying to find the lesser of the evils for me because I know for a fact I am absolutely diabolical with pine for example.

 

[helsbells]

I'm closer to Leicester.

RE NHS acknowleding your MCS how did you do that. Last time I saw my doctor it was 3 years ago and I saw her outside. There's one place I can go on holiday but it's in Spain which involves the horror of airports. One time they wanded me, I lost awareness But i could feel the molecules in my body moving backwards and forwards with the metal detecting wand. My legs wouldn't move afterwards and i needed a wheelchair to get to the plane!! So stoic :-( Took me 5 days to get over the worst but for months afterwards EMFs were Hell. There was a spell of electrical storms and every time the lightning flashed it flashed through me and I felt awful for days.

I've lots of sensory and brain symptoms that also stop me seeing people. But the only way I do okay-ish is when we are outside. Anyone in my home is a bit of a nightmare I smell the laundry and persoanl care products for days.

I'd love to stay and chat but been on here far too long and the sun is calling me outside.

Hope you got some sun, (re loc. only ask cos I grew up around Mans.) i totally get tyhe molecule thing thats how I feel when I answer a moblile phone, literally feeling the elctric/sgnalling. We sound pretty similar symptoms wise - except you can do sun LOL

When I say the NHS acknowledge my problem I mean at least I have it on NHS letter head from a hospital consultant of a London hospital. how seriouly others would take it I don't know. i did cut up rough after doxycycline and ended up in hospital for two weeks. How I did it willow was by getting an alternative diagnosis to ME and then a lot more seems possible. i got diagnosed with EDSIII, i have wondered about starting a thread about it if anyones interested but don't want to wander oftopic if people prefer not. i have read a thread on the forum about it but feel i could offer a little knowledge. I mention it only because if I had googled this I would never have thought I had it and it turns out I have

 

[brenda]

The flooring was already put in. You can get chemical free laquer. I made the mistake in one house of putting laminate down - bad idea - formaldehyde. Cork tiles are an alternative.

 

[willow]

i got diagnosed with EDSIII, i have wondered about starting a thread about it if anyones interested but don't want to wander oftopic if people prefer not. i have read a thread on the forum about it but feel i could offer a little knowledge. I mention it only because if I had googled this I would never have thought I had it and it turns out I have

Seems I missed the thread on the forum. I'll look that up. And yes I'd love to hear your further knowledge!

So re the flooring are you saying you can't tolerate old pine too, or is it more newer boards?

Long story on how last Summer I bought a (supposedly) low toxicity carpet but months later despite open doors and windows I can still smell it's not healthy to me. (I did the trick where you stick a bit in a screw top jar and check out the fumes there a few days later)But if you think it might be interestiing I found 2 companies who do that. Some say Marmoleum but it's awful to my body.

Have you heard that Rich Van Konyenburg talking about the P450 detox enzymes we have in our liver are also in our nasal passages. Hope I have that right! The thought that my nose was going crazy over the same things as my liver struck a chord with me and explained why it happened so quickly.

Good Luck with it. The filter idea sounds good.

 

[maryb]

Helsbells I've had the filters 3 years now, I checked at the time if they did VOCs and they did, if you e-mail HH about what you want they are very helpful , mine were delivered pretty quickly. Its the same symptom trail for us isn't it, get the thing with the phone, only did texts for 2 years, progressed to loudspeaker now, holding the phone away from me, that works pretty good.
I'm so much better than I was 3 years ago, like you, allergy shots turned up my MCS and a host of other intolerances, Dr >Myhill told me if they don't get the end points just right it can hypersensitize you, great knowing after the event eh!! Friends have had to go to the bathroom to wash the smells off them too, great hostesses :Retro smile: Stay strong you'll get there.

 

[caledonia]

An environmental medicine specialist is the kind of doc you want for MCS. Other than making your house a safe place, the two things that have been most helpful to me are provocation neutralization drops (no shots involved), and raising glutathione via Rich Vank's Simplified Methylation Protocol.

The reason you have problems with chemicals/smells, etc. is that you're low on glutathione. For every chemical molecule you encounter, you use up one glutathione molecule to process it. If you're low on glutathione, no processing can occur, therefore very tiny amounts of chemicals will make you sick.

Raising glutathione has been about 80% effective for me so far. I don't have to take the neutralization drops any more. I can tolerate markers in small amounts, most perfumes, car fumes, etc. although I still have problems with fabric softeners. I still practice avoidance as much as possible and use safe products wherever I can. As I keep working on raising glutathione, the problem should clear up entirely.

Check out Needs.com which is a catalog for the chemically sensitive. You can get safe paints and also VOC blockers for existing paints and carpets which are outgassing from AMF (American Formulating and Manufacturing).

You can also quickly outgas your house by closing the windows and heating it up during the day, then cooling it and opening the windows during the night. Of course, you want to be living elsewhere during this procedure, and have someone else handle going in to air it out. You might need to do this every day for a week or so to get it completely outgassed.

 

[maryb]

You can also quickly outgas your house by closing the windows and heating it up during the day, then cooling it and opening the windows during the night. Of course, you want to be living elsewhere during this procedure, and have someone else handle going in to air it out. You might need to do this every day for a week or so to get it completely outgassed.

'outgas' - I've never heard of this term please can you explain what it is.